Mom's dozing and I'm playing catch up

I'm just going to take a few minutes to write a quick update.  Mom's dozing, and I'm trying to get a little caught up on things around here.  This post is a little personal, but I want to open up a little and let you all know what's going on with me.

If you haven't heard already, I got pretty badly burned a few days ago.

I wasn't having a good day.

The burn happened just a few minutes after I choked, and both those things really made an impression on me about how unexpectedly short life might be, and about how important it is to be prepared, and mostly, about how important we all are to those who love and need us.

The choking happened when I was putting away some chicken that I'd boiled on the stove.  I'd lifted the chicken out of the water, and I'd turned the heat up to start boiling the liquid down for borth.  Then, I picked a couple pieces off the chicken to nibble on.  I was in a hurry, and I swallowed one piece too quickly.  I remember thinking as it was going into my throat, just as it was too late, that the piece was way bigger than I'd realized.  After a second, I knew that I was in trouble.  I couldn't breathe, I couldn't yell.   I couldn't even choke.  I was just standing in the kitchen with the refrigerator door hanging open and the container of chicken in my hand.  I'd put the lid on it, and I'd gotten it midway to the fridge.  I was frozen in that moment in time.

Stephan was sleeping upstairs - he'd had an early morning job - and he'd just gotten home a little while before, and David was watching a movie upstairs.  I knew that I had to get upstairs because that's where all the arms that could perform the Heimlich were located.  (Side note:  Amanda is planning to review with me how to do a self-Heimlich using a chair . . . )

It seems, as I think back on it, that it took a long time, and I remember everything in slow motion, but it must have been almost instantly that I was bounding silently up the stairs.  I couldn't make a sound.  Everything in memory of it is so silent.  It's terrifying to think about.

And then unexpectedly, halfway up the stairs, the meat was in my mouth instead of in my throat.  I could breathe again.  I was shaking all over, and I still start shaking when I think about it.  I'm shaking now, days later, as I type it up.

Life is really not a sure thing.

So, a few minutes after I'd choked, while I'm still shaky and not thinking very clearly, I decide to sip some chicken broth to try to calm down, and I ladled boiling broth into a coffee cup.  I turned and picked my devotional up off the island so I can read it while I sip, and pray, and calm down some.  Then, without any warning at all, the broth is all over the front of my shirt, and I'm burning.  I ripped my shirt off and ran to the bathroom to lean over the sink and have cold water run over the burn.  My skin blistered right before my eyes.   I can think of no words to describe the feeling this gives a person.

I think I might have already been in shock, and I just sunk.  I couldn't function.  I didn't know what to do.  I called my mom-in-law (Thank God she answered her phone), because I was paralyzed.  She told me what to do, and hung up and did it.

Things happen so fast.  You can't know what the next moment will bring.

I learned that it's important to have things around the house like burn pads and big bandages and that's it's important to review things, like the Heimlich maneuver.

I learned that I'm fragile, and I need to be more careful with myself.  I learned that maxims like:  "Chew before you swallow" and "Hot! Hot! Careful!" are words of wisdom.

But, mostly, I learned that I can count on those I love to be there for me.  David and Stephan both offered to drive to CVS to pick up burn pads for me.  My mother-in-law told me quickly what to do.  Mommy spent most of the evening trying to get out of her chair and worrying over me.  (Even after she forgot that I'd burned myself.  She just wanted to get up.  She knew that somebody needed help.)

I'm still really woozy, even today.  I keep making mistakes.  (I've burned mom's oatmeal TWICE in the last few days!)  I couldn't figure out how to make an angle cut in the right direction with Stephan's skill saw.  Then, I was shocked when he came home and turned the board over and made the cut.  He teased me . . . asking me if the hormones I'm taking (progesterone) are "female" hormones . . ."  implying that I'm making myself a little more stupidly feminine.  :-)

I'm not myself even yet.  Maybe it takes a few days to recover from a shock, but, in a way I'm more myself than I've ever been because I realized that I'm really important.  I haven't thought very positively about my own value for the last couple years as I've looked to my past with so much regret and shame.

But, in a moment of clarity when I thought I was going to die, I realized that if something happened to me, you guys would miss me.  I'm not perfect, but I am missable.  And, Mommy needs me.  I think many of us who have a tendency toward melancholy, as I do, . .  those of us like that often think as Orlando voiced in "As You Like It" just before he entered the ring with the king's wrestler.  (He is responding to the ladies who are begging him not to do this foolish thing):


"I beseech you, punish me not with your hard

thoughts; wherein I confess me much guilty, to deny

so fair and excellent ladies any thing. But let

your fair eyes and gentle wishes go with me to my

trial: wherein if I be foiled, there is but one

shamed that was never gracious; if killed, but one

dead that was willing to be so: I shall do my

friends no wrong, for I have none to lament me, the

world no injury, for in it I have nothing; only in

the world I fill up a place, which may be better

supplied when I have made it empty."


But, he was wrong. He was valuable, as are we all, faults and all.

Flower power :-)

Last night Mommy fell asleep just looking so happily at these flowers.  This morning, I could see that she was reaching for them.  So, I put her bed railing down to let her be able to reach.  Then she spent several happy hours trimming the dead leaves from the plant. She managed to find a small handful of dead leaves.  (BTW - I hadn't seen any dead leaves at all, but she found them.)  Stephan says that we should just give her more and more flowers.  But, unfortunately, when I brought in the blue flower pot of these (that I got to match the pink), she wasn't interested at all.  So, I suppose it's win some, lose some with flowers same as with anything.  I've got these flowers out in the sunshine right now, but I'm planning to bring them in again tonight and see if they will make another magic.

A few days ago she told me that she kept trying to figure out how to touch the things she could see in the TV.  Maybe these flowers sort of made that wish come true.

quick update

Yesterday evening I made the decision to stop applying the progesterone cream on Mommy for a few days.  This made me really sad, but she's been very agitated, in a different way than I've seen her since she came here, and I'm worried that the progesterone might be making her sad.  I'm a little unhappy about this because she also seems much more mentally present, and I think that I'd do just about anything to have her be more "with us" mentally, but I realize that making her sad isn't one of the things I'm willing to do.

This morning she seems back to her regular self.  She spent about forty minutes examining the flowers on her applesauce bowl, very intent and happy.  Then, when I brought her Boost and poured it into her glass, I asked if she wanted me to "take that bowl to the kitchen," and she said, "No. I want to keep it here."

So, I'm a little depressed - just a little - that the progesterone didn't give us the miraculous kind of results that Dr. Lee talked about in his lecture.  But, of course, there's not a good way to know if it was the progesterone cream or if it was something else that made her agitated.  Her leg was hurting worse than usual.   Maybe it was that.  Also, I've been sick, myself, maybe she's just empathizing with me.  Or maybe it was just something in the air, or something she could hear.  Maybe the birds outside were singing a different tune, and she picked up on that.  Who knows?  Everything is so complex, and with Mom, it seems like she changes so much herself.  A thing that was wonderful yesterday is just terrible today.  It seems almost impossible to keep good track of what works and what doesn't.

But, for now, we're going to wait a bit on the progesterone cream and see what happens if I try it again in a few weeks. For sure, in the last couple of days she seemed much more aware of her surroundings, but she also seemed much more aware of her limitations.  If that's all that the cream will do for her brain it isn't worth it.

What do you guys think?

I feel like now, this moment, is what matters with Mommy.  She doesn't have yesterday, at least not in the way that you and I have yesterday.  She might have tomorrow, but she doesn't know how to look forward to that.  But, she's got NOW.   And I want this moment to be a good moment for her as much I can facilitate that.

Brain Games

I'm trying to think of ways to play the sort of games I play on BrainHQ with Mommy.  So, here is one of my attempts.  I think, "I'll just have her pick out the letter that's different."

Very clever, yes?

Not.

So, I give her the rack, and I say, "I think one of those is different."   And, I wait.  She says, "Yep, might be."  And, then she looks for a long, long time.  We are talking minutes.  All the time I'm thinking, "This is big flop."  She can't even tell the D from the A."  Then, she says to me, "I don't think we're going to need all these A's."

So.  Success, just not the exact success I was thinking of.

  After that I changed tactic.  See pic above.  I'm feeling pretty clever about this one, but after a little while, I start to worry that maybe it's too difficult.  I get bored, and I go to the kitchen to get her some kefir, and when I come back (a few seconds later).

I said, "What does that spell, anyway," and she said, "Mother."  So, I think this might be a good game, I might try to put the tile in a different location later.  She was able to spell out mother, and mom, and dad, but she didn't recognize "Laurie".  Oh well.  I think if anybody is to blame for me having a name that is difficult for a brain in the throes of Alzheimer's to recognize, it is her or Daddy.

Hints for other brain puzzles accepted with great happiness below in comments or sent to my email or call me.  Also, did one of you send me a link to my email of brain games or exercises to do with Mom?  I can't find it.  I might have accidentally deleted it in a purge.  Please, if you did and you remember, send it again.  (Sorry, whoever, probably Jeanie)

PS - I think her hands are looking even better than above (yesterday) this afternoon.  I'm so excited about the Bentonite clay, the Magnesium, and the hot water bottle.  BTW - after I washed the clay off this morning, she wanted the hot water bottle back.  I guess it must feel really good.  :-)

Good News about Mom's Hands!

all these pics were taken today

So, I've taken some pictures of Mom's hands to show those of you who are familiar with her hands her progress.  

As you all know, the Tylenol has been doing just about nothing for her hand pain even when I give her the maximum the doctor will allow in a day.  Last week, I appealed to everyone for advice on what to do about Mom's hand pain.  I've incorporated three of the suggestions so far.  I will incorporate more later, but I want to try to get some kind of an idea if something works or not before I start the next thing.  I always make the mistake of starting all the good ideas at once and then I don't know what works for mom (or for me) and what doesn't.

The first thing I used was the Bentonite clay.  I have been applying a clay mask to her hands in the morning just after I feed her the mixture of Tylenol and vitamin ground up and stirred into a couple spoons of applesauce.  

To make the mask, I mix about a teaspoon of clay with about a teaspoon of warm water, and spread the solution over her hands.  Then, I wrap her hands in a cloth

I leave the clay on her hands for about twenty to thirty minutes.  

After applying the Bentonite clay the first time, her hands were visibly less swollen.  She kept holding her hands up in front of her and examining them.  I asked if they felt better, and she said, "Was something wrong with them?"  Of course she doesn't remember that she has been complaining that they hurt for months.  But, to me, the fact that she forgot or did not realize that her hands hurt was HUGE.

The next day I added a hot water bottle, and when the warmth started to touch her hands, she looked up and me and her eyes were so thankful and happy.  I can't even describe.  It was a moment of great success for me, as a caregiver.

Then, day before yesterday, I substituted one crushed Magnesium tablet for one of the Tylenol.  I'm not too concerned about the Magnesium because she is already getting it in her multi-vitamin, and Xarelto lists Magnesium as one of its inert ingredients. 

I feel that the Magnesium might be helping pain all over her body and not just in her arthritic hands as when I changed her linens, she did not wince nearly as much when I lifted the leg that has the blood clot.  

Below are a few more pics.  Every single day, they have looked better than the day before to me.  I don't know if its wishful looking or if this system has really made a big difference in her hands' appearance, but FOR SURE there is a difference in the way her hands feel.  She is using them without pain and she doesn't wince when I touch them.  That's a big improvement!

all these pics were taken today

all these pics were taken today

all these pics were taken today

prepare for boredom, but sometimes boring stuff is important, too . . .

I am using Table 1 in the Alzheimer's study I posted about earlier in the week, the one where nine of the ten people's symptoms improved, to try to work out a game plan for Mommy to have as much relief as is possible at her stage and for me never to get this disease at all.

Table 1 is broken into three columns.  The first column is the goal, the second the approach, and the third is the rational and references.

As I've tried to organize how much of this regime I can implement with both mommy and with me, I've been looking mostly at the goal and the approach columns.  I don't have the education to understand the rationale and references.  Brilliant scientists and snake oil salesmen all sound the same to me, so I might as well ignore the rationale bits . . . 

So, to break it down line by line:

The first goal is to optimize diet, minimize simple carbohydrates and minimize inflammation.

In this study the first approach was to give patients a choice of several low glycemic, low inflammatory, low grain diets. 

I don't have the diets to choose one from, but we will eat as much low gylcemic index foods as possible, we will incorporate fermented foods as they reduce inflammation, and we will have as much fresh food as possible.  We will limit grain consumption to sourdoughs and sprouted grains.  We will try to avoid the foods that contain Xenoestrogens. 

The second goal is to enhance autophagy, ketogenesis.

The second approach is to fast twelve hours each night, including three hours before bedtime.

For Mommy and me, our last food and drink (unless she says she is thirsty) will be at 7:00.  The exception will be for me to drink enough water to swallow my melatonin.   Our first food or drink will be at 8:00, which gives us thirteen hours of fasting per night. 

The third goal is to reduce stress.

The third approach is to personalize this with yoga or meditation or music.

For me, I will engage in meditative prayer.  For Mommy, her Forest and Flower Netflix shows are very relaxing and meditative.  She will watch these daily.

The fourth goal is to Optimize sleep.

The fourth approach is to get eight hours of sleep per night.  Melatonin is used, and sleep apnea is excluded.  I have begun taking melatonin myself, and I will discuss Mommy taking it with her doctor.

The fifth goal is exercise.

The fifth approach is to exercise 30 - 60 minutes per day four to six days a week.  For me, I will walk Scooby at least a mile and as much as two.  For Mommy, this is much more difficult.  I am still pondering it.  When I exercise with her, even a little bit, she seems to have a lot of pain the next day.  I am praying and pondering so that I can build her up to thirty minutes four times a week.  Pray with me and give me insight if you have any.  As a side note, I feel strongly that if we just move Mommy's arms and legs and she HATES it, that it will have a negative and not a positive overall effect.  We need to think of some kind of exercise that she will enjoy. I am planning to try a lion hunt later today.  Wish us luck!

The sixth goal is Brain stimulation.

The sixth approach is Posit or related brain exercises.  For me, I will do the brain exercises available on Brain HQ for ten minutes every day.  For Mommy, we will make physical versions of these games, and we will play them with her.

The rest of the goals and approaches involve a lot of test results and supplements.  Since we haven't had most of these tests done, I've decided to just make as many educated guesses as I can.  For example, I don't know if our homocysteine is less than seven, but the doctor has already prescribed B12 shots for Mom.  Or, I don't know what our fT3, fT4, E2 or T counts/results are, but I know that as women over 35 we can use some progesterone.  Some of the supplements will interact with Mom's Xarelto, so I have to be careful about her supplementation.

Here's our, mostly my, supplement list so far:

alpha lipoic acid (only me until I ask the doctor about Mommy)

Ashwagandha (only me until I ask the doctor about Mommy)

Curcumin (in Turmeric - only me as it will interfere with Xarelto)

Magnesium

Melatonin (only me until I ask the doctor about Mommy)

Multi-vitamin, daily   (many of the vitamins on the paper are in both Mom's and my multivitamins)

Oil Pull with coconut oil (For Mommy we will wipe her mouth and tongue with a cloth and coconut oil)

Progesterone

Vitamin B12

I'm still adding and researching vitamins even as I type . . . 

I'd had this dream of figuring out the whole program and then posting it on the blog.  I thought that I'd be able to do that several days ago, but it didn't work out that way.  First of all, this is a heck of a lot of stuff to work through.  Secondly, I've been dealing with - "why am I not old yet, already" - woman issues for the last week, and I could hardly function.  In the last twenty years, since Amanda was born, I've been inconvenienced twice by my monthly cycle.  This is the second time.  The first was about five years ago, and it wasn't really that big a deal.  (Usually I don't even notice my monthly visitor.)  This time, I'm laid flat by this, and I am in misery and pain.  But, I'm really glad this happened as it got me to finally listen to Jeanie talking about Progesterone, - I have ignored several of her attempts to wake me up about this important supplement (sorry, Jeanie)  Now, I've ordered it, and used it, and I finally have begun to realize how important it is for my health, as well as for Mommy's.

So, this has been a long and boring post.  But, since I'm trying to work this out for both Mommy and for me, I wanted you all to know where we're heading and what we're doing.

Some Hope!

Who'd have thought at this stage of the game that there might be some hope to have Mommy more fully interact with us?

Now, I'm not pipe dreaming that she'll ever be back in full. Even crazy me is more realistic than that, but this study does give some hope that we can do a little something for her to keep her mind a little more clear for a little longer.

Happily, Jeanie had intuitively and through her research done some of the stuff that the doctor in the study prescribed.  (I'm thinking especially of the probiotics, the low-gluten, and the coconut oil.)  That's probably one reason Mom is still doing as well as she is with this horrible disease!

In this study, nine of the ten participants had remarkable reversals in cognitive function.  Since it was only ten people, it is still basically anecdotal, but nine out of ten ain't bad, and I'm willing to change my own lifestyle based on a nine out of ten.  Plus, most of the stuff - except possibly the supplements - are just basic good advice that we all give and get all the time.  e.g. Get enough sleep and exercise.

Here is a link to the study I am talking about, if you are interested, please read it.  It is so amazing.  Click Here.

For me, I'm incorporating as much of this as I can into my everyday life as I really want to stay around bugging you all - in my full mind - as long as possible.  (After that, I might resort to haunting or sainting - depends on my goodness levels, I suppose - he he he.)

For Mommy, I have to be careful not to give her anything that would interfere with the Xarelto.  But, I am going to start to MAKE her do her exercises.  I've been really lax about that.  I know that is wrong to give in to her about the exercise, but it is so hard for me to make her do something when she doesn't want to.  But I'm learning to do just that.  For example, the moving her (like into the kitchen in her wheelchair or over onto one of her chairs) or for the changing out her bedding, I've gotten really good at just doing those things without really giving her much warning and I don't take no for an answer.  I can change her out in no time at all (I'm going to time it just to see, but I bet its less than four minutes, even with BM).  For the transferring her from her bed to the wheelchair.  It is less than five seconds, once I've got her sitting up on the edge of the bed, I just pick her up and swing her over.  Fast as fast.  I count, and I don't get to ten.  (I count because it seems to distract her.)  But, the other day I said something like, "See, I'm getting really fast at this,"  She replied, "I'm glad you think so."  (You can all imagine her tone - lol)

So, the pic is of Mommy and me making sauerkraut, and sour dough, and drinking kefir.  Mom LOVES the strawberry kefir (as Jeanie says - "it's all the sugar ;) yummy!!"  And, I second that.)  We're going to go all probiotic and sour/sauer  :-)

Should add, that we are watching a really opinionated and cool chiropractor make sauerkraut for us.  (I LOVE this guy ;-) At the end of his class, he gave everybody a high-tech sour foods kit.  It was a mason jar - lol )